AdvocacyRSSToday
A caregiver shares his personal story about losing his wife Mary Ann to ALS (a disease that affects nerve cells controlling muscles) after 34 years of marriage. The article describes their medical journey, which began with neurologic symptoms in 2011 and initially included a misdiagnosis of Parkinson's disease before she was correctly diagnosed with ALS.
WHY IT MATTERSThis personal account highlights the diagnostic challenges ALS patients face—Mary Ann was initially misdiagnosed with Parkinson's disease—which is important for newly symptomatic patients to understand they may need multiple evaluations before getting an accurate diagnosis.
AdvocacyRSS2 days ago
A parent shares their experience watching their son Julian improve at taking his hemophilia treatment over the years. The article highlights how better treatment adherence—actually taking medications as prescribed—has helped their son pursue his dreams, like performing on Broadway. This personal story shows how managing a chronic condition can get easier with time and support.
WHY IT MATTERSFor families managing hemophilia, this firsthand account demonstrates that treatment adherence improves with age and practice, which can help prevent bleeding complications and allow children to participate fully in activities they love.
AdvocacyRSS3 days ago
A mother shares her personal story about raising two sons with severe hemophilia A, a bleeding disorder where the blood doesn't clot properly. She describes how she has had to stay strong and vigilant while caring for her children and managing the challenges that come with this lifelong condition.
WHY IT MATTERSPersonal stories from hemophilia caregivers help newly diagnosed families understand what to expect and show that others have navigated similar challenges successfully.
AdvocacyRSS5 days ago
Thomas Graham shares his personal story about fighting with insurance companies to get the hemophilia treatment he needs. The article explains the barriers patients face when trying to access care and emphasizes that patients need to speak up for themselves. Insurance denials and delays are common problems for people with hemophilia, and knowing how to advocate can make a real difference.
WHY IT MATTERSHemophilia patients often face insurance denials or delays for clotting factor treatments, and learning advocacy strategies from patient experiences can help others navigate these barriers more effectively.
AdvocacyRSSMay 14
A person shares their family's experience after their father was diagnosed with ALS, a serious disease that gets worse quickly. The article talks about how families suddenly have to learn about a disease they don't understand and search for answers and care. This is a personal story about what it's like when someone you love gets diagnosed with ALS.
WHY IT MATTERSThis article highlights the urgent need for faster diagnosis and care pathways in ALS, where families have limited time to find answers before the disease progresses.
AdvocacyRSSMay 11
This article shares a personal story about attending MDA Summer Camp, a program run by the Muscular Dystrophy Association for people with muscle diseases. The author reflects on lessons learned at camp about community, support, and why showing up for others matters. The piece emphasizes the emotional and social value of connecting with others who have similar health challenges.
WHY IT MATTERSFor patients and families affected by muscular dystrophy, this article highlights how peer support programs like MDA Summer Camp can provide emotional benefits and a sense of belonging that goes beyond medical treatment.
AdvocacyRSSMay 11
A person shares their personal story about living with muscular dystrophy, describing how they noticed symptoms starting at age 9—like difficulty lifting their arms, getting tired quickly, and being slower than friends. The article focuses on how patients can move forward and take action after receiving a diagnosis, rather than dwelling on limitations.
WHY IT MATTERSThis patient perspective highlights the importance of recognizing early warning signs of muscular dystrophy in children and emphasizes that a diagnosis doesn't mean giving up—it's an opportunity to focus on what you can still do.
AdvocacyRSSMay 8
A parent shares their family's experience with Duchenne muscular dystrophy (DMD), a serious genetic muscle disease that affects three of their seven children. The article focuses on a conversation with their daughter about what it means to be a carrier of the DMD gene—someone who carries the genetic change but may or may not develop symptoms themselves. This personal story helps families understand how DMD affects multiple family members and the importance of genetic counseling.
WHY IT MATTERSFamilies with DMD carriers need clear information about inheritance patterns and what carrier status means for their own health and future children, which this firsthand account provides.
AdvocacyRSSApr 27
A personal story about a man named Jared who has severe hemophilia B (a bleeding disorder) and seizures since childhood. The article highlights how teachers and classmates treated him as 'special' or different on his first day of fifth grade, showing how invisible illnesses can affect children socially and emotionally, not just physically.
WHY IT MATTERSChildren with hemophilia B and other invisible illnesses often face social stigma and misunderstanding in school settings, which can impact their mental health and quality of life as much as the medical condition itself.
AdvocacyRSSApr 22
A mother shares her personal story about raising two sons with hemophilia, a bleeding disorder that prevents blood from clotting properly. She describes how the condition has affected her family's life and what it means to be a caregiver for young men living with this lifelong disease. The article uses her childhood memory of wanting to do gymnastics as a contrast to the physical limitations and challenges her sons face.
WHY IT MATTERSParents and caregivers of people with hemophilia can find community and validation in hearing directly from other families navigating the same daily challenges of managing a chronic bleeding disorder.
AdvocacyRSSApr 22
A mother shares her personal story about being diagnosed with pulmonary hypertension three months after giving birth to her second son in 2023. The article focuses on how she manages her condition while raising three boys and the emotional impact this serious lung disease has had on her life and family.
WHY IT MATTERSPatient stories about pulmonary hypertension help newly diagnosed patients and families understand that others are managing this serious condition while maintaining family life, which can provide hope and practical insights into daily living with the disease.
AdvocacyRSSApr 22
Delphine Andrews, a life coach and disability advocate from North Carolina who lives with SMA (spinal muscular atrophy), shared her personal story in a podcast interview. She discussed how she learned to accept herself, help others with disabilities, and build a career as a life coach. The episode also covered important topics like managing caregivers and understanding how different parts of someone's identity intersect.
WHY IT MATTERSHearing from someone living with SMA about practical strategies for self-acceptance, caregiver management, and career transition can help newly diagnosed patients and families navigate similar challenges in their own lives.